Tuesday, September 7, 2010

Baby and Cardiology Update

Once again, I meant to post much sooner. Life has been CRAZY! My time seems to barely allow me to do the things I HAVE to do, no time for extras. Blogging is an extra. Between Kaidence and myself we have doctor appointments 3-4 days a week. To tell you the truth, I have had to take some time to deal with my emotions and fears with regards to Kaidence's future. In fact, it took me crying myself to sleep a couple of nights. However, all I can do is my best to care for her, love her and teach her life's lessons.....the rest is out of my hands. What is meant to be, will be. Sometimes that is so hard to deal with and at other times it comes as such a relief.

A quick pregnancy update. I have Non Stress Test 2 times a week for the baby. Fluids have been up and down. However, more time spent being down. Last week I had my last progesterone shot, so we will see what my contractions do. I will be 35 weeks and have made it past the time I delivered McCaden. Hopefully, I can make it at least 2 more weeks. The kids are getting excited, especially Kaidence. So that is the baby update......now for the Miss Kaidence update!

As far as her heart goes, things are still the same. I am a little frustrated that her heart is not recovering quicker. It really hasn't made any improvement since coming home, but it hasn't gotten worse either. I am worried that her heart rate is still high, the vessels in her neck come and go. Her heart is still big and therefore her valves are still leaking. However, her heart is functioning (squeezing) well and so that is a great BLESSING. Cardiology wants to keep Kaidence on her steroids and heavy drug doses longer than originally planned, because her pressures in her heart are so high due to the rejection. It looks like she may be on these for the next couple of months. Longer than originally thought. They are also starting her IVIG treatments next week in hopes that things will start to move along with regards to recovery and treating the antibodies and rejection mor aggressively. So because of these treatments Kaidence is no longer able to get her flu vaccine for this year (scary) and she is very immunosuppressed. We will just have to stay home, keep germs away and hope for the best. Please be understanding if I get a little more freakish about sickies as flu season approaches. Just remember that a virus is what started it all and is the reason she needed a new heart to begin with. So yes, it scares me.

Kaidence is flying high on her steroids. I know most others have the opposite problem with grumpy kiddos on the roids. Kaidence seems to be very hyper on them. As usual they make her hungry and I think she has gained about 3 pounds since being home. Her face is very round and she has a cute little double chin. She seems to think she is the luckiest girl in the world. She is so upbeat and full of herself. She talks non stop and has the funniest little giggle. She misses going to primary on Sundays. I think that is when she is reminded most that her heart needs to get better. She understands the whole germ thing. She has spent time outside painting with her brothers (she loves art stuff right now). She has also spent time in her playhouse. I feel bad because the neighbor kids usually play in it with her, but for now its just for her and her brothers. She also loves to go out and ride her bike. This girl just goes and goes. When I nap, she lays in bed next to me and watches movies. She will spontaneously grab my hand and kiss it or lean forward and kiss me on the cheek while I sleep. She doesn't know that I know she is doing it, she thinks I am still sleeping. Its those moments that I just savor the sweet tender spirit and personality of this little girl.

I am grateful that she IS so happy, crazy and full of life. She is such a sweetheart.

Our hope is that Kaidence can continue to stay healthy and that her heart may start to heal and recover if that is what is meant for Kaidence.


Melissa said...

So much craziness. I hope that things look up soon for Kaidence and that you pregnancy lasts as long as needed to get baby here healthy!! Good luck!

Michelle said...

Hey Shauntelle... I look up to you so much. You are so brave and always know what is best for Kaidence.
With that in mind, I want to help. Please, can I help? I can meet you at the hospital when Kaidence has IVIG treatments, or just appointments. I can sit with Kaidence while you tend to a new baby, or I can hold a baby while you tend to Kaidence. I know you have tons of friends and family, but just wanted to offer anyway.

Hang in there. We love you. Take Care.
Michelle (Madison's mom)

Allison said...

I can't imagine the stresses you are facing right now anticipating a new baby and worrying about Kaidence too! I hope that everyone around you rallies together to take your kids and let you rest so that your new baby can arrive safely at full term. We continue to pray for Kaidence and I was so glad to see an update this morning!

Clemments Family said...

Shauntelle, I like many people look up to you strongly, you have a heart of gold. Kaidence is so lucky to have you as a Mom, because you truly take such good care of her and always know what is right! Please let us know if we can help in anyway, if its bringing dinner or simply and hear to chat with. I am still praying for Kaidence, miracles happen everyday!

carolyn q said...

Sending you my love. I can't say I understand all that you are dealing with, but I can be by your side and support you 110% with whatever you need.
There is something just extra special about Kaidence. She is beyond her years in showing love and compassion. So sweet to show you how much she adores you in such simple and meaningful genstures, but the why wouldn't she, you are an awesome mom.
That is great you have made it to 35 weeks and though it might be uncomfortable, I am pulling that you can go another 2 weeks.
Yes, I agree you are loved by many including me.

Em said...

I read this post out loud to Mike. We wish Kaidence was feeling better, that he heart had improved. It is great news to hear that it has not worsened, but we wish it was better. Our thoughts and prayers are with you. Our situation is nothing like Kaidence, but we will probably be spending the winter indoors with our little guy. We are so excited for this little baby. Cannot wait to see pictures and see what he or she will look like!

Me said...

Oh Shauntelle, We will continue praying for her sweet little angel heart. She is just the sweetest little thing I love that she gives you kisses in your sleep, that is so tender. Please know that I will do anything to help you. I do live just down the road from you. I hope that you are able to get some much needed rest and take care of you and the baby. Hang in there girl.
‎"In our approach to life, patience also helps us to realize that while we may be ready to move on, having had enough of a particular learning experience, our continued presence is often needed as a part of the learning environment of others."

Kat and Jon said...

I have wanted to email or send you a message for sometime now. You don't know me...but you know my family members. I am Ryker and Gracie Gourley's aunt. I have always wanted to thank you for the kindness and compassion you have shown my family. When we were at the hospital with Ryker, the nurse brought in a tape player with a CD of primary songs on it from the "patient next door". Emily told me it was your daughter in the next room and you had always reached out to the other patients in the hospital. It was so thoughtful of you to think of Ryker, Emily, Mike and the rest of our family during such a difficult time...and that you actually DID something to reach out. I often find myself thinking of others, and with good intentions wanting to do something to help. But, too often my actions are only intentions. I will always remember that seemingly small act of kindness and the peace of primary songs. I pray Kaidence turns a corner soon! With love, Kathryn (Gourley) Robinson

Djinni said...

WOW! It has been so long since I have checked on Kaidence. I had no idea you all have been going through so much. I will keep you in my prayers and try to check on you more often.

Wendy C said...

You are such an inspiration! You remind me what matters most and my troubles seem so small after reading how patient and wonderful you, your family, and your Kaidence are! You are in my prayers and just know you are loved by so many!

The Wilson's said...

This is the first time I have read your blog because I wanted to see exactly why we were all fasting. I have to admit I don't really understand everything, but I do understand the love you feel for Kaidence. When I read this, I just sat here and cried. I cried for the special spirit that she is, for the bond you share, and for the eternal perspective and peace you have. You are an example to me of strength and how to rely on the Lord and His purposes. Hang in there, and know that you are not alone. We are all praying for you and Kaidence.